not wrong

Gratuitous picture of my girl that has nothing to do with the post you’re about to read

–

Brooke and I are cuddled in her bed. It’s getting late and at least one of us is nodding off. It’s time for me to go.

“OK, baby,” I ask, “who’s picking the number?”

“You would do it,” she says.

“OK,” I say, stroking her hair absent-mindedly. “Let’s do twelve.”

“And one for good luck,” she adds.

I smile in the darkness.

“Of course.”

–

We-ve been doing this in one form or another since she was five. Since the day that she asked me, “In how many you go?” and held up her little hand, fingers splayed and asked, “Do you go in five?”

Over the years, we’ve toyed with the ritual. We’ve giggled over numbers like 17,436,812 – “Too big!” and made up numbers like a hundred million million quillion – “Way too big!” We’ve played ‘Too long” and “Too short”. She’s counted and I’ve counted. We’ve counted together. We’ve counted up and (particularly when we were working on early subtraction) we’ve counted down.

One night, we had decided that it was a count together kind of night. But Brooke didn’t seem to be counting. When I reached fourteen, apparently alone, I asked her what happened. “I thought we were counting together,” I said. “I did it,” was her only response. I left it alone.

The pattern persisted. She agreed to count together. I counted alone. She said we HAD counted together.

I knew I was missing something.

–

So many times we get frustrated with our kids. A teacher says they’re not listening or ‘paying attention’ because their eyes are elsewhere and their bodies remain in perpetual motion. My girl listens best when she’s moving – it eliminates the need for the supreme effort that it costs to keep her body still and leaves her the energy to focus – even though focused is the last thing you might think you see when you look at her.

We get angry because it seems our kids aren’t listening, when really, they’ve taken in every last word – along with every click, tick, hum of the lights and sigh of the radiator all at the same time. But because they’re not making eye contact, we assume they’re not listening. It takes a long time for adults to re-learn that eyes are not ears.

We ask for a response and get frustrated when we think we don’t get one. “Honey,” we say, “I asked you a question.” But perhaps the response came, it just didn’t come where we were looking for it to land.

I knew I was missing something.

–

One night, I asked her to start counting without me. I promised to follow. Then I laid perfectly still and listened.

And there it was – a faint scratching sound on the comforter.

She was scratching out the numbers with her fingernails.

Two more nights and I was sure.

“Baby, did you scratch out the numbers on the blanket?”

“I did.”

Over time, the scratching turned into rubbing and the rubbing turned into tapping.

One day I asked if I could tap the numbers too.

Now, every night, we choose a number, she grabs my hand and says, ‘We would do the tappies.” And we do. Together. Nothing makes me happier.

–

The world demands that we interact with it in its own language. A language that Brooke does not instinctively speak. Day in and day out, she must find a way to function within it. To translate nearly every thought and feeling and impulse and mode of communication into something else – something ‘expected’ and ‘acceptable’ and ‘intelligible’ to everyone around her.

I am so grateful for the moments when none of those machinations are necessary – the fleeting instants in which I can, in my own way, tell her that I get it. That there’s someone in this world with whom she can speak her own language and be understood. I wish I could do so much more of it than I currently can. It is a gift to both of us.

I had an e-mail exchange about disclosure yesterday with a young woman on the spectrum who I greatly respect. In her e-mail she said, “The only time I’ve ever not felt disabled and wrong is when I’m with other Autistic people.”

I want so desperately for my girl to have access to others who speak her language instinctively – who have shared her experiences and who are able to understand her from the inside out. She deserves nothing less. But so too, I shudder at the thought of that being the only time and place that she ‘doesn’t feel wrong.’

As I went to bed last night, I thought of her words. And they haunted me. Home, I thought. Home is the place that my daughter – or anyone’s son or daughter, child or adult – should feel ‘not disabled’ and, my God, not ‘wrong.’

I had trouble falling asleep. And then I thought of the tappies. And as I pictured my girl and me, hand over hand, tapping out the numbers in her language, I hoped that in some small way, I might be showing her that she’s not the least bit wrong.

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52 thoughts on “not wrong”

I watch you with both Katie and Brooke and believe me you have always shown them they are every thing but wrong. They are two children in this world who know how much they are loved and how right they are.

Jess, this is gorgeous. I love it. I love everything about it. I want to find that world too where our kids and the adults that came before them don’t feel wrong. I love the tapping; I love “It takes a long time for adults to re-learn that eyes are not ears;” I love you!

Like your email correspondent, I’m an autistic person who has shared that sense of being perpetually wrong all my life — except when I’m with other people who are also on the margins. They don’t have to be autistic, necessarily. They’re just people who aren’t “normal” in the way that the society defines it. Those are my people, and it’s been very hard for me to connect with them all my life– not because they’re not there in abundance, but because I was trained for so long to try to be “normal” and to *not* seek them out. It makes for a lonely, exhausting life, and I’m changing all that now. (I recently wrote a post on the subject that you might find strengthening: http://www.journeyswithautism.com/2011/12/02/the-path-that-chose-me/)

This is why it’s so important that parents join us to create a world in which “normal” doesn’t exercise such tyranny. When “normal” is the sine qua non of being human, we autistic people will always fail at normalcy. Some of us can act normal (and doing so can get us some of the things we want in life), but we can never *be* normal, and we know it. Deep inside, we know that we’re playing a game we can never truly win. The most healing thing for me in the last couple of years has been to realize that normalcy is just a myth. I’m 53 and I still haven’t found a normal person! But the problem is that most people are trying doggedly to attain the idea of normal, because normal is equated with being fully human, and anything other than normal is associated with shame and brokenness. I know that’s all a complete lie. The key to making the world truly inclusive of autistic and otherwise disabled people is to expose the normal = fully human equation for the lie it is — as you have done so powerfully in your post.

I so understand your feelings on this one, and you are always welcome to write to me anytime if you want to talk more.

Rachel, I just want to say thank you for your incredibly important insights and powerful message. The insights and voice you share, as well as that of other autistic adults, helps me be a better parent to my son.

rachel, i love this on so many levels. in fact, i forwarded your entire comment to a friend yesterday who is struggling with issues that are (seemingly) totally unrelated to this, yet it couldn’t have been more perfect. we ALL deserve a world free of the tyranny of normalcy. and not for nothin’, but that would make a hell of a book title, don’t you think? 😉

If you’re interested in the origin of the tyranny of normalcy, you might want to take a look at Lennard Davis’ brilliant article “Constructing Normalcy” (http://www.clc.wvu.edu/r/download/29469). In it, he shows that the word “normal” did not even enter the English language until 1840, and that it was the result of the work of early statisticians, who came up with a norm of the “average man” by averaging human attributes on a bell curve. This fictional composite of human attributes became the standard to which all human beings needed to aspire, even though the norm itself was simply a statistical average and not embodied by an actual person. (Today, we have a similar norm in The Human Genome Project, which has taken the infinite diversity of human genomes, in which no two are ever alike and in which everything is always changing, and created a composite of “ideal” genomes presented as *the* genome.) And, by the way, most of the early statisticians were also eugenicists, so “normalcy” was wholly bound up in the idea that any deviation from the norm was, by definition, less than human and needed to be stamped out. So you can see why this idea took hold and how difficult — and important — it is to get beyond it.

I’ve explained to people for years that just because my girls aren’t looking at them it doesn’t mean they aren’t listening. When my girls were pre verbal many people couldn’t understand them. I’ve always been able to. I like to say have always been fluent in Lauren and Claudia.

Jess –
You are such an inspiration to so many people, myself included. My 18 year old daughter has Eosinophilic Esophagitis (EoE) which is an autoimmune disease where white blood cells, which hnormally attack parasites, but incorrectly attack the GI tract when in contact with trigger foods. She has only 20 foods that she can tolerate and uses an amino acid formula via a gtube to supplement her diet. What does this have to do with your post today? Unfortunately, she lives with daily pain, fatigue and nausea even with her modified diet. She too feels like a stranger in this world where food is the focus of every meal and every celebration. In our home, we eat her safe food but that is the only place where her food is prepared. We have found an EoE community where she can feel accepted and understood but will continue to spread awareness of the disease and challenges it causes. You can read more about Eosinophilic GastroIntestinal Diseases (EGID) at http://www.apfed.org

Your blog helps me handle each day with a new perspective and insight. Many of the kids with EoE are on the spectrum and others like my daughter had sensory integration issues. Your insight, your love, your wisdom are a huge gift – thank you!

I can’t tell you how many times K has gotten in trouble during something, at school or during something like swim lessons, bc she wasn’t making eye contact/sitting still. So then, clearly, she isn’t paying attention. She is, and way better than if you forced her to do those two things. The school thing kills me bc we have this giant iep, and yet still they don’t always get it, either. Our kids are THERE, just in their own way. We shouldn’t doubt them.

So much here, so much for me to think about as I wonder how my son feels. The conversation I need to start with him, to make sure he grows up knowing that he is ‘not wrong’ and that there are others who think and see the world as he does. Awesome post.

Beautiful, and true. “Eyes are not ears” – ah, how many times I’ve been guilty of that, and had to learn that he’s listening and paying attention even when he doesn’t appear to be doing either. It was a freeing day in our home school when I decided to let him play with his Matchbox cars while we read a book, and he was better focused than usual, and really following along. We’re still working on having him make some sort of response when asked a question, since about half the time he doesn’t respond, and gets annoyed when we have to ask him again. Maybe he DID respond, but not in a way most NTs will get (or anyone not telepathically tuned to his mental wavelength, lol). I keep telling him, “I can’t hear what you don’t say out loud, and if I don’t hear a response, I have to ask again. I’m not nagging, I just need you to SAY something so I know you heard me.”

for us, it was a brilliant speech therapist who told us one day that she let brooke stand up during their sessions because she was much more able to attend. it was one of those light bulb moments – seemingly small, but not small at all.

and yes, it’ is tough when our kiddos respond in some way but not in a way that we can understand. brooke very often responds to questions VERY quietly and gets extremely (did i say EXTREMELY) frustrated when asked again.

Beautiful! I learned the “eyes are not ears” this year having a conversation with my 13y/o daughter with autism just a few short months ago. I wrote about it and I am so thankful for the words she spoke to me.

‘My girl listens best when she’s moving – it eliminates the need for the supreme effort that it costs to keep her body still and leaves her the energy to focus – even though focused is the last thing you might think you see when you look at her.’

in one sentence you’ve explained what i’ve suspected about my own little girl for years. thank you.

Jess, a beautiful post. And I too hope there is a book coming one day, that might reach the 50% of Canadians who don’t have daily, easy Internet access (don’t know the US stat on that, possibly more).

This post, and one last week where you linked to an autistic adult who talked about the pain of forcing “quiet hands”, made me think about the ABA therapy my kiddos receive and to look critically at what is ‘useful’ and what is simply conforming due to this tyranny of normalcy…

You have done it again Jess!! You have snuck into my mind, into my heart, and hit a question that I struggle with! My son Has his diagnosis, so his stims, and flaps, his non verbal tendancies are explained away by those around us and a precious few look past that and see the BOY…..but my oldest daughter, she asked me the other day “why can’t people love me for ME? Why do they want to change me?” and it broke my heart. We are in the evaluation and testing phase with her, and even though the world around us seems to think she is “just shy” or “just has not been taught how to behave properly like a lady” I know in my gut that aspbergers lurks there somewhere. I see it when we get in a social setting and she looks for the nearest exit…I see it when she hits sensory overlaod and, like her brother, meltsdown, I see it when she walks through the house happily flapping her hands, the list goes on. Oh how I wish people would not tell her she is “wrong”, but could see the beautiful loving young lady she is rather than blame me, or try to change her when she doesn’t “Fit into thier mold”

I, too, have forwarded this to my family. We are just entering this world with my 11 month old girl with a new Rett diagnosis. I am desperately paddling to keep my head above water, trying to figure out our ‘place’ in this thing. Thank you for this insight. It has manifested itself as a beacon of hope in my world.

What a beautiful gift we should all give to our children – the gift of knowing that they are so perfectly right!! You are such a great mom, can’t imagine that Brooke or Katie could possibly ever feel otherwise~!!

Wow. I needed this tonight. I need to start communicating with Casey in a way that he and I both can understand.

Your writing is amazing. I’m in awe. I sometimes think I know all there is to know about dealing with autism. I’m so glad I found your blog. I need to want to learn more like I did in the beginning. I’m glad that there are people like you out there to teach me.

I finally took the time to wait the other day when my daughter was asked a question by me. Normally I shoot in with “Did you hear me?”. This time I waited. I decided I would see how long she could go between me re-asking the question for her to finally respond, but because I waited, and I didn’t say anything she responded. Just as I was about to repeat the question, but before I could utter a word, she answered. I was surprised. You mean to tell me she has always been able to hear me? Words like: ‘takes time to process information’ filled my mind. Right. But maybe not that, maybe she just needs to finish her own thought first. And why not!?

Absolutely! This is an incredible story to read. Your words are strong & compassionate! This is what I feel in my heart & what drives me as a teacher. I want to offer a classroom, culture, forever open place full of opportunities to feel ”not wrong”. I want to encourage, model, support, teach my teaching peers & all children to be open & ready to learn the lessons anybody can offer. To embrace our neighbor. To do tappies! Thank you for sharing. Sending your family my love & prayers.

Well said. Thank you Lord that you gave Jess the ability to communicate aboutBrookes world, so that I can love, appreciate and yes adore Gods creation in whatever form it comes in like Autism, and Asbergers because in those ways I must pause and listen to them in my heart the song that is coming from them. I don’t speak their language but I believe they speak a language that God created for them. And it is lovely, it is pure and sometimes downright holy, because of the purity and simplicity.

Thank you for the reminder to find my way into their world. It is so often a challenge. I hate when I say something about behaving in a “manner that is acceptable to society”, my kids are 11 and 12 with large vocabs. I always try to be sure to emphasize that at home you may not have to respond like that but out in the rest of the world it might be necessary.

My parents did a wonderful job of instilling that sense of NOT WRONG in me. I’ve always felt that I was a person worth knowing, that I had something to offer to the world by being myself. That anyone who wouldn’t accept me the way I am wasn’t a person I wanted to spend time with.

But that sense of self-worth that sustained me through my childhood has been increasingly at odds with the adult world. It’s as an adult that I started to have doubts about not being good enough, about being wrong. Not because I so desperately want to fit in (because I don’t), but because of the incredibly negative reactions that other adults display when I’m just being me. The stark contrast between what I feel and how others respond to me is gradually wearing me out.

So yes, you are doing a marvellous job with both your girls. Knowing that you are NOT WRONG is the bedrock. But it’s not enough. We as adults need to make other adults see that bullying and keeping others down and making them feeling defective is not something that only kids do. We all do it to each other. Constantly.

Amen. And I’m sorry it’s so damned hard. Thank you for being true to yourself, and in so doing helping to pave the way for my girl to be able to do the same. We will keep talking, keep educating, keep changing hearts, even if it’s one at a time. Because I couldn’t agree more – It shouldn’t be so hard.

Exactly. There is a fine balance between looking for the beauty that is, and the beauty that could be. Everyone is always striving for better, bigger, more, but then fail to see that there is so much that is already beautiful. Like your daughters. And it’s a lesson to keep in mind while we strive to make this world a better place for their beauty.

I often think that adults are the ones that need to learn the most lessons…It starts in school with oh but you don’t want him/her to be different, you don’t want them labelled…Yet the parent often already knows that they are different for whatever reason( especially if you have spent the last forever in doctors offices, therapies etc…) I love and accept my kids for who they are. What I can’t accept is the attitude of others to this…
You are right..IT NEEDS TO STOP NOW..Thank you for sharing your story.
It has been a rough day for several reasons in my world today and both Jess’s post and your reply struck a chord…
Thank you both.
Peace